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November 26, 2015 at 5:24 pm #22691
I am very happy to say that I am now on my 3rd year of participating on this forum. I only hope I get to participate here for another three years.
From the first scary night, asking questions and hoping for a response, this forum has provided me solace, comfort, and best of all, accurate information. In an effort to give something back, I continue to post my progress reports. Hopefully, the information will be useful to someone.
First of all, Happy Thanksgiving. I can still honestly say that I have a lot for which to be truly thankful. I also figured it was time to send out another one of my friends and family update notes to keep everyone in the loop.
Summary from last 12 months:
– After almost one year of being labeled as NED (No Evidence of Disease), I had a recurrence in Oct 2014. The malignant melanoma had metastasized to my lungs.
– In Nov 2014, I started participation in an innovative immunotherapy trial combo at Mount Sinai in Miami Beach named MEDI4736-1611. If you search this term, you will see my detailed updates.
– For the first two months, I had great results with dramatic reductions in tumor mass.
– For the next eight months, the tumor load remained stable, which is considered a “win” in this game.
– However, in Oct 2015, my regular CT scans showed progression in tumor mass but no spreading to new organs or developing new tumors within the chest.
– These results were confirmed with two more CT scans and discussed in detail with a specialist team of oncologists.
The New Drug Combo
– In October 2015, the FDA finally approved a new immunotherapy combo. Based on tremendous trial results, we opted to change to this new therapy plan.
– This combination therapy involves IV infusions of two drugs: Ipimimulab (brand name is Yervoy) and Nivolumab (brand name is Opdivo).
– By themselves, both of these drugs have provided modest success. However, when combined, the response rates have been the best solution to date for metastatic melanoma.
– My first infusion on this combo was October 26th. The typical plan is to take both drugs, every three weeks, for four cycles. The fifth and subsequent cycles would continue for another six months, but only include the Nivolumab drug by itself. After six months, a decision would be made to either continue the infusions or possibly stop taking it if remission has been achieved.
My latest wrinkle: I am now officially Dain Bramaged
– On Monday, Nov. 9th, during a regular follow-up appointment with my team, I normally review any side effects from the therapy. I happened to mention that my left hand seemed odd, in that I was having trouble typing. It was not numb, but it felt different. This was mentioned among the other many side effects. Since I have not had a brain MRI in almost a year, they recommended that I get one.
– On Tuesday, Nov 10th I had the Brain MRI.
– On Wednesday, Nov 11th, I receive a call from the Head of Neurology at Mount Sinai. He explained to me that a 1cm melanoma lesion had formed inside my skull, next to my brain. It was actively bleeding within itself, hence increasing in size and causing swelling in my brain. The lesion was pushing against the section of the right parietal lobe which controls my left arm. He said he was rescheduling some other obligations so he could fit me into his schedule. In so many words, he said that this was not an elective surgery and should be done immediately.
– On Thursday I checked into the hospital and they operated on Friday.
– On Friday, the 13th, I actually had brain surgery to remove the cancer mass inside my skull. The procedure is called a craniotomy. At the top of my head, above my right ear, they shaved a spot the size of a baseball and cut an incision in my skin about the size of a golf ball. They then removed a round disk of my actually cranium which was about the size of a quarter. They then sucked out the bad stuff, replaced the cap, and sewed up my skin.
– After three days in the ICU, I was allowed to go home. With the help of my wife, daughter, and her parents, I have spent the last week recovering. Due to the risk of potential post-surgical seizures, I have voluntarily agreed to not drive for a week or so. I am taking some steroid and anti-epilepsy drugs to further minimalize the chances. I should be fully transitioned off those meds by next week and resume driving myself.
The journey continues
– On Monday, Nov 23rd, I had several meetings with my oncology and neurology teams. All are happy with my progress and are surprised with my rapid recovery.
– Also on Monday, I received my 2nd combo dose of the Ipi & Nivo. I was a little tired yesterday but am feeling good today.
– I have a followup brain MRI on Wed and will probably schedule a preventive round of SRS Gamma Knife to further reduce the risk of recurrence in the brain.
I hope this update helps you to better understand my journey, as well as the many moving parts to make it happen. This time of year particularly underscores the many things for which I am thankful. A wonderful wife and daughter who have taken on so much extra in order to enable me to walk this path. Great family and friends who have provided tremendous support. And finally, life itself. I am thankful to still be here, to be able to kiss my wife and daughter. I am thankful to see the beauty of each new day. I am thankful for you.
Happy Thanksgiving to everyone here at MIF. The journey continues….
MattNovember 26, 2015 at 7:36 pm #68005MathewRParticipant
Matt, glad to hear that you’re doing well after a tough few weeks. I had two cranis in two weeks in the summer. Second one due to a CSF leak. It took me about 6 weeks to really recover (energy). I’m now about 12 weeks post surgery and it is (almost) like I never had the procedure. Best wishes for your continuing recovery and happy Thanksgiving.November 26, 2015 at 8:20 pm #68006Catherine PooleKeymaster Matt and Mathew,
Hoping both of you continue on a good course! I know it has been a rough time. I very much appreciate you sharing your stories and insights here. I am thankful for folks like you that think of others even though you are caught up in your own issues. Your kindness extends a long way!November 27, 2015 at 2:31 am #68007BNP68Participant
Glad to hear you are doing well. Great update I know others will benefit from. I’ve admired your approach to your treatment.
Glad you are feeling well Mathew.
BrianNovember 27, 2015 at 2:32 pm #68008JBunyanParticipant
Matt and Matthew
Glad things are going in the right direction.
Re brain mets, over here in UK if you have 2, as I did in Oct 2013, one’s driving licence is suspended for min 2 years post treatment. I had Gamma Knife in Dec 2013 and have had no symptoms, but still no licence as yet. Our UK rules give no discretion to one’s own physicians – 2 separate neurosurgeons have written on my behalf to no avail. I have found no other country in the world is as strict as the UK. Weirdly, if I had my condition in the USA with a US licence I could drive here in UK for up to a year on such a licence. I have taken it up with my MP (Member of Parliament) but with no success. Hopefully my licence will be re – issued soon .
Hoe you both continue to improve.
Peter (In remission post Ipi and Gamma Knife 2013 / 2014)December 5, 2015 at 12:21 pm #68009
MathewR- thanks for the kind words. I always appreciate your posts as I find the info to be accurate and insightful. Two? You are a tough man. I found the craniotomy to be a little disorienting for the first few days. To be honest, I was a little nervous. But now, only 3 weeks later, I feel almost 100% and looking forward to the preventative SRS gamma knife next week to clean up any micro remnants.
Brian: Thank you for your kind words. Your posts from 2013 about the BMS trial with Nivo/Ipi helped me to make the decision to start this combo. I hope to be able to share my experiences to help the next person.
Peter: So glad you are still doing well. In addition to the info shared on this site, I think it is equally important to share the success stories. The ACA will openly provide statistics that the 5-year survival rate for S4 is about 10%. I see that as “Someone must fit in that 10%. Why not me?” As for cars and driving, you have touched on a sensitive topic. Sorry to hear about the UK rules. It really should provide some discretion to your doctors to have input into the process. I can sense the frustration in your words. You see, I am a self-described car guy. Always have been. I still own my very first car, a 1966 Mustang and I love the modern technology of the BMW M3. The idea of losing my “freedom” after the craniotomy was almost as scary as the surgery itself. It was a significant conversation that my wife could not understand. My time driving in my car is still one of the little bits of paradise in this new normal that I now live in. I voluntarily do not drive now but have started mixing in a couple short trips around the neighborhood. It has been three weeks since my surgery. After the SRS next week, I will reassess the situation.
Best wishes for everyone and be well…
MattFebruary 25, 2016 at 7:48 pm #68010
I have received several private messages so I guess it is time to write a quick update and let everyone know that I am still here, still alive. Don’t write me off yet! Sometimes life seems to be going in ultimate slow motion, and other times, it flies by. The last 2-3 months have been a blur for me, my family, and anyone else who happens to be within this tornado.
I am still fighting the good fight. This roller coaster continues to prove to be interesting, if nothing else. And as with all of my updates, I will do my best to provide some insights for the next person who unfortunately walks this path behind me. Just as my journey has been made easier by the wisdom of those who have struggled before me, I would like to pass my learnings on to the next person who unfortunately comes behind me. Hopefully, this will enable the next person to either meet me at the end of the path or to make it a little further than I did.
In my last update, I had a craniotomy to remove an active brain lesion. I then completed a single high-dose round of gamma knife. Mild side effects. Follow-up scans were clear. During this time, I was also completing the initial combo portion of Ipi/Nivo program. Both infusions on the same day, every three weeks. I finished all four (4) combo infusions and have since started the Nivo-only maintenance doses every two weeks.
That is where the “normal” stops and interesting begins. With the benefit of hindsight, here is a summary of the last 10 weeks of my life. It was a challenging holiday season, to say the least. There are eight separate nodules in my lungs that are being actively tracked by my radiologist during each of my scans. Sometime in late December, one of the eight nodules evidently died, broke off, fell down my throat, and became lodged in my primary right bronchus. This caused a buildup of mucus and led to the collapse of the bottom 2/3 of my right lung. This condition is called Atelectasis. Not fully knowing what had happened and chalking it up to post-craniotomy issues or maybe the flu (or maybe just blatant denial of symptoms by the patient), I did not immediately take action. I waited to even mention it to my doctor, even as I started coughing up some small amounts of blood each morning. I was convinced that I would enjoy Xmas and New Years with my family. After all, in my mind, I was getting better. Within a week, the condition progressed and my breathing severely decreased. I was having trouble walking from one end of the house to the other. During one of my numerous daily coughing fits, I coughed so hard that I fractured my #5 rib. I also popped a hole through my lung and an air pocket formed in my chest called pneumomediastinum. Unaware of any of this, the extreme pain in my chest finally led me to believe I was having a heart attack. On January 12th, I was taken to the ER. After several days in the hospital, I learned all of the above. After consulting my entire oncology team and having some more scans, I scheduled a bronchoscopy, which successfully removed the necrotic tissue (fallen melanoma nodule) and the mucus buildup on Feb 17th. Within 24 hours, my right lung started to re-inflate and I am making great progress toward regaining full breathing and stamina.
But the fun does not stop there. In the battery of scans, a follow-up Brain MRI showed two new lesions in my brain. The first one from November in my right parietal lobe was dealt with and gone. However, the January scans showed a new 11mm in the left parietal lobe and a new 5mm in the cerebellum. We decided on the proactive approach and scheduled a 3-treatment low-dose gamma knife treatment for each lesion. Just yesterday, I completed the last of six total treatments. Next scans planned for early April so fingers crossed that they zapped all of it.
My primary oncologist and thoracic surgeon are very optimistic. By the way, my progression to Stage 4 went from diagnosis in right foot, then to right thigh, then NED, then lungs, and now brain. The necrotic tissue blockage, while temporarily scary, provided very clear proof that at least some of the cancer in my lungs is dying. Whether it is attributed to the MEDI4736 trial from last year or the current Ipi/Nivo treatments, we are not sure. I am just happy to see it moving in the right direction for the first time in several months. It is amazing what some positive news can do to lift your spirits.
Still with me? Almost done. Here are a couple things that I would like to share with everyone out there who is either going through it or supporting someone who is. While these might not provide any profound insight into the world, they are all things that I learned during the last three months.
– I think I underestimated the effects that the Ipi/Nivo combo was having on my body and mind and personality. As the side effects built up, I chose to ignore them. I like to say that Melanoma picked the wrong guy to mess with. I’m too tough. Trust me. Don’t try to be a hero. I was so focused on the holiday season and spending time with family that I let my own health take a back seat. Tough it out. I quickly learned that you are worthless (or possibly even more trouble) to your friends and family if you do not take care of yourself. And once your health has deteriorated, it is much more difficult to regain it.
– When you begin to lose your physical health, it is very easy to also begin to lose your mental health. For me, it did not happen overnight or during a weekend. It happened gradually over a few weeks. An extra day in the hospital. An extra day in bed when I got home. An extra pain pill or two in the morning to make things a little easier. Ignore an inbound phone call from a friend. For me, it happened so quickly and so easily. January and most of February breezed right by. We all know it but it is worth repeating: Maintaining your mental strength is just as important, and possibly more important, than maintaining your physical strength. We get scans, take meds, modify our diets, and many other things to physically-fight cancer. Don’t forget the mental exercises. Use your support system to talk about your thoughts and feelings. For me, writing these updates is tremendously therapeutic.
– And finally, always keep your most important things in the forefront of your mind. For most, it is friends and family. I agree. Money, work, some previous hobbies, and other things have paled in their appeal to me during the last three years. However, in the last month, I have learned a new thing that I am so, so, so grateful for. Something that I never previously considered in my life. Something so basic and fundamental. I am thankful for the ability to breathe freely and easily. I am thankful to simply be. For the very first time in my life, I realized the privilege and gratitude for being able to inhale a large, long, deep breath of fresh air. It is my new intoxication. Deep breaths in wooded areas, in freshly-mowed lawns, and on beaches by the ocean. I enjoy them all. I will never lose this appreciation for the rest of my days. And I hope you never have to gain this particular appreciation.
Be well….February 25, 2016 at 7:59 pm #68011gostanParticipant
Your saga simply amazes me. I applaud your resolve and attitude. And your story gives all of us a little inkling of what we each need to think about to stay positive. I for one intend to dwell on the positive. And I do pray to the higher power for some good news to head in your direction. You definitely deserve some.February 25, 2016 at 8:49 pm #email@example.comParticipant
Wow Matt…what you have gone through is really unbelievable…so they are still giving you Nivo and so do we take this to mean that you may be responding on some level from Dr. perspective? You might recall that my husband’s melanoma also started similarly on the foot (left heel to be exact – where the sun doesn’t even hit it and it was harder to see or diagnose…) traveled behind left knee to right groin and is now throughout pelvis. He is doing the Nivo/ipi combo starting in a week after already having done ipi and Keytruda separately. He is adding that to dabrafenib he is already taking and throwing radiation in for good measure (abscopal effect?)…very aggressive treatment plan..I hope you have a period of stability so you can regroup both mentally and physically..we are all routing for you.February 26, 2016 at 3:00 am #68013MathewRParticipant Matt, glad to read your update and that you’ve bounced back after a tough several weeks.February 26, 2016 at 8:44 pm #68014Catherine PooleKeymaster Matt,
I finally finished reading the whole story and just amazed at you. Yikes! I’m so glad you are improving from this and yes, we need to pay very careful attention to our bodies.February 26, 2016 at 9:41 pm #68015
Thank you to everyone for all the kind words.
Goston: Thank you for the kind words. Like you, I hope our stories can help another.
MatthewR: Thank you too. Hope all is well too.
Catherine: Thank you. I have not had a chance to contact you yet but I am planning on attending the SFTS event in April. I think it is would be a good trip and make up for last year. I look forward to meeting you in person.
firstname.lastname@example.org: SEE MY COMMENTS BELOW IN ALL CAPS
Wow Matt…what you have gone through is really unbelievable…so they are still giving you Nivo and so do we take this to mean that you may be responding on some level from Dr. perspective?
THEY ARE HOPEFUL THAT THE NECROTIC TISSUE BLOCKAGE IS A RESULT OF A POSITIVE REACTION TO THE IPI/NIVO COMBO INFUSIONS. MY BLOOD WORK IS GOOD AND I HAVE SCANS PLANNED FOR EARLY APRIL. I WILL KEEP YOU POSTED.
You might recall that my husband’s melanoma also started similarly on the foot (left heel to be exact – where the sun doesn’t even hit it and it was harder to see or diagnose…) traveled behind left knee to right groin and is now throughout pelvis.
SO SIMILAR. I WENT FROM THE BALL OF MY RIGHT FOOT, TO MY RIGHT THIGH, TO MY CHEST, AND NOW TO MY BRAIN.
He is doing the Nivo/ipi combo starting in a week after already having done ipi and Keytruda separately.
I NEVER TOOK IPI OR KEYTRUDA SEPARATELY. WITH THE IPI/NIVO COMBO, I THINK EVERY PERSON IS DIFFERENT. I HAD SEVERAL SIDE EFFECTS, BUT FOUND WAYS TO MANAGE THEM. I HAD A RASH AT VARIOUS TIMES AT VARIOUS LOCATIONS. I ALSO HAD SOME FATIGUE AT TIMES. FOR ME, THE SIDE EFFECTS SEEMED TO APPEAR APPROXIMATELY ONE WEEK AFTER THE INFUSIONS.
He is adding that to dabrafenib he is already taking
I GUESS HE IS BRAF POSITIVE? I AM WILD-TYPE. I NEVER TOOK DABRAFENIB BUT I DID TAKE TRAMETINIB AS PART OF THE MEDI4736 TRIAL.
and throwing radiation in for good measure (abscopal effect?)…
very aggressive treatment plan..
INDEED, AN AGRESSIVE PLAN. I JUST HOPE MY RADIATION THERAPY DID ITS JOB. WE WILL KNOW IN EARLY APRIL. I VIEW IT AS NECESSARY EVIL TO TARGET THE SMALLER SPOTS. SIDE EFFECTS SO FAR ARE TOLERABLE.
I hope you have a period of stability so you can regroup both mentally and physically..we are all routing for you.
THANK YOU FOR THE KIND WORDS AND SEND MY BEST TO YOUR HUSBAND. WE WISH HIM GREAT LUCK WITH HIS TREATMENT PLAN.February 27, 2016 at 2:16 am #email@example.comParticipant
Hi Matt…yes, my husband is BRAF positive and according to his last PET, Drs were thinking they saw some progression on the BRAF/Mek. I see his next treatment as three-fold…1) giving him the ipi/nivo combo even though he has taken ipi and pembro individually as the combo has highest response 2) keeping him on dabrafenib for BRAF throughout as there are studies showing good response when you combine targeted and immuntherapy – the targeted drug makes the cancer release antigens that are then more visible to the immune system as it is ramped up by the ipi/nivo combo 3) using radiation to shrink tumors but also capitalize on potential of synergy and “abscopal effect” with both BRAF and immunotherapy drugs…I just hope he can tolerate it all.
You may have mentioned but did Drs. test your tumor for c-kit mutation in addition to BRAF? c-kit more common in acral melanoma i.e. on the foot/hands. Hope you continue to see response to combo…please keep us updated!July 18, 2016 at 3:27 pm #68017
I know it has been a while since my last update but I felt the need to take a self-imposed hiatus from everything, including MIF. Between health, work, and personal matters, I needed to focus a little more on my family and my health and a little less on other stuff. I cannot be thankful enough for all of the support and guidance provided by Catherine and the members of this forum group. As part of this group, I hope you understand my need for a brief separation. Everyone deals with things in their own way.
I have been waiting to receive my latest results before I provided an update for the group. Well, I finally received my complete results last night. Overall, it is good news. However, like all news in my world, it is sprinkled with some interesting bits too.
As a general summary, I feel very good. I am slowly feeling better, each day, as compared to the struggles from six months ago. Although tired after my infusions, my energy level returns after a few days. There are still the regular issues like pain management, lymphedema, and headaches, but nothing that is not manageable. There are also the newer and progressing issues of vitiligo and tinnitus which give me something novel to monitor. With each day, I am reminded to be truly grateful. I am still here, still alive, and still continuing to fight to do everything I can to hold off this disease.
My blood work is almost all good. There are some slight issues with my liver function but this is nothing new. My ALT levels have continued to be slightly elevated for months but they appear stable at this elevated level. And although elevated, it is not high enough to discontinue my bi-weekly infusions of the Nivolumab (Opdivo) maintenance doses. Otherwise, my thyroid, LDH, and RBC levels are good.
The MRI of my brain was really good. In summary, two of the three previous nodules (tumors) are completely gone. There is still one remaining nodule in my left lobe which previously measured 11mm, and then 3mm, and is currently 2mm. The ones in the right lobe and rear cerebellum seem to have disappeared. And to add just some drama and suspense, there is a “nonspecific increased flair signal in the right superior deep white matter” which is stable and consistent with the previous scan.
The CTs of my chest and abdomen were also good. In summary, where there were eight measurable tumors on my lungs, there are now only two of them, measuring 12mm and 5mm respectively. My collapsed lung has completely healed, although there is some residual scarring which remains. My liver still has some fatty lesions but they have been stable for a long time.
So overall, this is about as good as we could hope for. I am sending my most positive thoughts to everyone, whether you are fighting it yourself or supporting someone who is.
MattJuly 18, 2016 at 4:16 pm #68018AnonymousGuest
Outstanding Matt and it’s good to hear from you.
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